
Ocular Melanoma Patient & Caregiver Symposium

Patient Reported Experience Measures: 2022 Highlights!
In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs):
- “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
- “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
- “Patient Survey: Treatment Plan Decision-Making” (September/October)
Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!
Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
- When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
- When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
- 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
- When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).
Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
- 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
- Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
- 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
- 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
- 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
- The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
- 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
- The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).
Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
- When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
- Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
- The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
- When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
- Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan.
- When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
- When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).
Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
- When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
- Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
- In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
- When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
- When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
- When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).
The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritising our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.
Upcoming Webinar: Prognostic Testing and What It Means to Ocular Melanoma Patients
Join us for a free webinar on Wednesday, September 14 at 5pm PST | 8pm EST.
Click here to register
Big steps forward in OM treatment & support in Canada
Ocumel Canada in the News
As Ocumel Canada continues to support and advocate for patients touched by ocular melanoma (OM), we are happy to see a monumental step forward in the treatment of this disease across Canada. Last week, Health Canada granted a notice of compliance (NOC) for Kimmtrak® (tebentafusp) for the treatment of metastatic ocular melanoma, closely following approvals in the United States, Australia, and the European Union.
Many patients with this rare cancer have been needing to travel from their home provinces coast to coast – to Toronto – for treatment, which is not an ideal situation for any patient, as they need to be close to their home and support system for ease and comfort as they fight this disease. Ocumel Canada is happy to report that in partnership with treating Physicians and Partners we are making progress in this situation and getting patients treated closer to home.
Global News spoke to two patients in this interview, click HERE to watch the recording.
Ocumel Canada and Save Your Skin Foundation applaud Health Canada’s approval of Kimmtrak® (tebentafusp) for the treatment of unresectable or metastatic uveal melanoma in HLA-A*02:01-positive adult patients. We now hope that every province and territory will take swift steps to list this drug on their public formularies in order to make this therapy available to patients across Canada.
We thank all patients and their caregivers who shared their experience and feedback to this process. To learn more about this immunotherapy treatment and the approval, read our full press release by clicking HERE.
To add to all of this great news – we wish to invite all Canadian OM patients or caregivers to join the VISION Registry, an online research database created by our friends at CureOM, Melanoma Research Foundation.
The database will allow researchers to better understand ocular melanoma (OM) as well as the needs and preferences of patients. For example, researchers can look at the socio-demographics, genetics, accompanying conditions, and treatments of patients from around the world and any potential links to OM that might exist.
The research will also look at patients’ experience from onset of symptoms to confirmed diagnosis and how that can be improved.
For the VISION Registry to be successful we need as many patients as possible to securely share their data. There is power in numbers! Please register and add your information to the registry. We are eager to learn together to advance knowledge and eventually find a cure for OM.
(At this time, the registry is available in English only, but we are working on a French-Canadian translation, stay tuned!)
Click here to learn more and join the Vision Registry: https://melanoma.org/visionregistry/
Looking Back at 2021
Our 2021 Annual Reports are out now!
It’s always a rewarding experience to look back on the past year and see how much the Foundation has accomplished.
Despite another year amid the pandemic, Save Your Skin Foundation and Ocumel Canada have continued to grow partnerships, operations and services, and reach more people touched by melanoma, non-melanoma skin cancer and ocular melanoma.
We are extremely grateful to our community of patients, caregivers, healthcare providers and sponsors who continue to inspire and support us in our endeavors.
Click on the images below to view the reports:
6th Annual Patients Redefining the Future of Health Care in Canada Summit
- November 15 Echo Pandemics in Healthcare
- November 17 Echo Pandemics in Indigenous Health
- November 18 Echo Pandemics: The Way Forward
- November 19 Patient Planning Session
Click HERE for more information: Agenda, Speakers, and Recording Links
1 Week Until the Federal Election: Make Healthcare a Priority
Take Action Before September 20
Send your local federal candidates a letter using our easy, automated website. You can customize the message to address issues important to you. Having local candidates hear directly from patients is very powerful.
The COVID-19 pandemic has pushed our healthcare system beyond its breaking point, as the system provided care to the overwhelming number of COVID-19 patients, while endeavouring to maintain care for all other patients.
Advocating for change has never been simpler and will only take you a few seconds.
Regardless of ability to pay, or where they live, Canadians should not be reliant on “the postal code lottery.” All Canadians deserve to have health care placed at the center of the commitments of our future government.
Contact your candidates now to have your voice heard! Automatically send a letter to your local candidates that you can personalize as much or as little as you want.